Rose and I during lockdown Today, more than 50 Australians will be told that they have blood cancer and tomorrow - another 50 families will be devastated by the same news.
Blood cancer is the second most diagnosed cancer in Australia and impacts 18,450 Australians every year. Myeloproliferative neoplasms (MPN) are an incurable, progressive, rare form of blood cancer that is significantly underfunded when compared to other blood cancers.
In 2021 during the height of the pandemic I started experiencing a ‘bizarre set of symptoms’ that led to a hospital admission for pneumonia, and eventually, a diagnosis for an MPN.
‘I just couldn’t shake this general feeling of being rundown, dizzy spells, migraines, and slipping into this sense of being more and more unwell.
After 10 months of seeing different doctors and having every kind of test performed, all while navigating covid, lockdowns, home schooling and running my business, I was finally diagnosed with an MPN. Through this I found out that I have the CALR genetic mutation which drives my cancer.
Since my diagnosis, I’ve been living with information instability. Until finding an MPN specialist, of which there are very few, I was being told conflicting information that if followed, could have had dire consequences. There is an urgency for awareness not only through the public, but within the medical world as well.
MPNs can’t be staged like other cancers and at diagnosis no one knows who will go onto progress into acute myeloid leukemia which is nearly always fatal.
The reality is my cancer is incurable and progressive and my CALR mutation puts me in a higher risk bracket of progressing. Living with the constant uncertainty and not knowing how long I will be around for my daughter is the hardest part of this new reality. I am still processing it all and as much as I, mostly stay positive, the future is scary and very uncertain.’
Sarah, having already raised 30k for the Leukaemia Foundation, with thanks to her Instagram followers is hoping to raise a further 100k for research into MPNs. Along the way she is raising MPN awareness within the community, including gently educating her 6-year old daughter about the significant challenge their family is facing.
‘Once we had a diagnosis, I have spoken to Rose, my 6 year old about it in an age appropriate way. She knows that there is something wrong with my blood and is aware it’s blood cancer. I wanted my her to know the word cancer before she heard it in the playground and possibly associated it with dying.
She knows that my energy levels have decreased significantly, and this means I need to rest more rather than bounce off the walls along with her. My drive for raising this lifesaving research comes from wanting to be here as long as possible for her and show her you can make real change with action.’
Please help me raise awareness and funds and find a cure for this bloody thing!
Sarah x
I am raising funds for the Leukaemia Foundation to be used for MPN research.
Click here to read about what we managed to achieve last time-
